Visiting Australia for the Narcolepsy Support Australia Conference

by julie on May 18, 2015

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“What could I say that they don’t already know?” This question haunted me in the months, weeks and days leading up to Narcolepsy Support Australia Conference.

Over a year ago, when NSG Australia’s leader-extraordinaire, Melissa asked me to be a keynote speaker at their inaugural patient conference, I said “Yes!!!” right away. No question, I wouldn’t miss it for anything. I’d never been to Australia before.

However, as the conference approached, I heard that attendees were super excited to meet me. I feared that I might be a bit of a let-down.

My keynote speech loomed large. I’d given my inspiring narcolepsy presentation countless times, but NEVER to people with narcolepsy and their loved ones. Generally, I spoke to medical professionals, students and pharmaceutical reps.  This was particularly meaningful, but what did I have to offer?

Screen shot 2015-05-17 at 10.47.53 PMThe other keynote speaker would be Emmanuel Mignot, MD, PhD, Director of the Stanford Center for Sleep Sciences and Medicine, aka the Wizard of Narcolepsy. I’d heard Dr. Mignot speak before and like many people with narcolepsy, I look up to him as a hero. He’s passionate, smart and inspiring. So yes, I was a bit intimidated.

Flying 17 hours across the Pacific, I hoped the right words would come to me. Instead, I slept lot and marveled at the cute little meals served on cute little trays. Who knew airlines still serve meals?!

Arriving in Australia, Melissa and her amazing family greeted me at the airport. After hugs and hellos, we sped off to the tranquil Sunshine Coast so I could rest and recover from my travels, where I fell in love with Australian coffee.

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On Tuesday, we visited the Australia Zoo (founded by Steve Irwin – RIP). I cuddled a sleeptastic koala, took selfies with a kangaroo and enjoyed learning about the native Australian animals.

11011466_771890719594863_6461511493425942524_nOn Wednesday, we drove to the Gold Coast and checked in at the sleek hotel where the conference would be held. I went for a sunset run on Surfers Paradise beach. Wow. First, I ran on the pavement, then the sand. Trying to capture the perfect sunset reflection, I got totally soaked, sneakers included. The water was soft and warm. I tilted my head back into the peach and purple sky and laughed at myself and at how ridiculously silly beautiful it all was.

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On Thursday, I planned to get serious about finishing my keynote presentation, but instead I got distracted meeting up with fellow conference attendees as they arrived. It was fun to finally meet my Aussie and Kiwi friends with narcolepsy (and try Tim Tams)!

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On Friday, I was honored to speak to a group of Australian sleep doctors. After I shared my inspiring narcolepsy journey, Dr. Mignot led an in-depth workshop with the physicians. It was interesting to learn about some the unique challenges for doctors treating narcolepsy in Australia.

10632858_771844079599527_1842420445179116164_nOn the morning of my keynote speech, Saturday – I awoke early at 6:00 a.m. with just a few final hours left to prepare. Sweat gathered under my bangs as I raced around my hotel room getting dressed, gather my books, and editing my powerpoint presentation.

11050861_771845389599396_4010679982858937027_nAt 8:30 a.m., I ate breakfast by myself in silence overlooking the expansive ocean. Out of no where, the final words for my presentation washed over me, quickly and all at once. I jotted down the inspiration and smiled big. It all made sense, just in time.

Stepping on stage at 11:30 a.m., I felt surprisingly calm and ready to do what I love to do  most – speak. I’ve found no greater “high” in life than holding an audience’s emotions in my hands – knowing that we’ll laugh and cry together, sometimes switching between the two extremes in seconds.  Was my speech perfect? Doubtful. But it was honest and from the heart.

11205519_771843812932887_6804333539138759278_nWhat I realized at breakfast was that I didn’t have to say something new or different. I didn’t have to share the secret formula for being happy and successful with narcolepsy. I’m not sure such a formula exists and I certainly haven’t figured it all out. I am still learning every day.

I realized that I just had to tell my story, knowing full-well that my audience already knew that story in their hearts and bodies. Aspects of my story were their stories. All I could do was stand before them as myself – goofy, teary-eyed, and stubbornly determined to make a difference.

Screen shot 2015-05-02 at 5.35.39 PMTo conclude my presentation, I shared a selection of NARCOLEPSY: NOT ALONE photos, and closed with a new message, the words that had come to me at breakfast, the message that I believe I was sent to Australia to impart. It went something like this:

Behind each of these photos is a remarkable story of a person with narcolepsy – each with unique talents, challenges, and strengths. You have all faced so much adversity with resilience and determination. Please keep fighting, and I will promise to keep fighting too. Thank you for letting me be part of your journey.

As the next speaker took the stage and began her presentation, I realized I had to leave the room immediately. I stepped outside and let tears stream down my face. I wasn’t happy or sad. I was just incredibly moved; an experience I’ll never forget.

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The rest of the conference and my time in Australia was just as amazing. Highlights include an epic Saturday night dance party, Mali Einen’s inspiring presentation, watching Australian football, and visiting a rainforest. More than anything, it was the people that made this trip so unforgettable. Your smiles, hugs, and kind words touched my heart beyond words. However, your vegemite? No comment.

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Saying goodbye to my Aussie and Kiwi friends at the conference was so hard. Saying goodbye to Australia’s beaches, accents and coffee was miserable. And  saying goodbye to Melissa’s family at the airport?

The whole family gathered around my suitcase as we stuffed it with TimTams, re-arranged my souvenirs and worked together to get it zipped up. This pretty much sums up the entire trip. The Jose and Benton family are a remarkable team of people who go above and beyond to help their family and others. I am awe-inspired by their efforts to pull off an amazing conference and so very grateful for their kindness, hospitality and generosity throughout my trip.

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To be honest, I came to Australia with a heavy heart. This spring has been extremely challenging for me with the end of a 2.5 year relationship with someone I loved very much. At moments, I’ve felt entirely lost and alone. While I was excited for my trip to  Australia as an escape or distraction perhaps, I never imagined that I’d travel so very far, only to feel so very at home and so truly not alone.

Thank you for making this the best trip of my life. 

Photos from my time in Australia
Photos from the Conference

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